July 22, 2014

Last week, didn't provide any clarity or peace. My mom's biopsy took longer to schedule than expected. But she found herself back in Vegas sooner than she would've liked. A week ago, we picked her up because her blood pressure was dropping pretty low. Her blood pressure used to always be a perfect 180/20 since her breathing problems started she began getting high readings. So, when they were low, her home health nurse was concerned. We brought her to my house and monitored her blood pressure. By Wednesday, her breathing was acting up again so the doctor advised us to go to the ER to be admitted into the hospital. There, she'd get the biopsy, a port implanted and start on Chemo. We sat in ER for six hours. Only lab work was taken. By 6 o'clock, a bed was ready and she was admitted into the hospital. We met with her oncologist and everything would be scheduled for Thursday. Later, the doctor for the hospital made her rounds and we thought she'd get her medications (we were told she would by the ER RNs and the admitting nurse). Medications weren't distributed until 9:30. A nicotine patch was requested but never issued (she hasn't had a cigarette since 6/29/14, but she does use vapor and e-cigs). I left about 11:15. There was no reclining chair for a visitor to stay the night, so I decided it was best I get a decent night's sleep since nothing would happen until morning, and I wouldn't be leaving once her chemo begun.
Just as I had gotten home, my mom tells me they won't change her incision bandage that is supposed to be packed twice daily. I last did it, about 11 am. They refused because they didn't have doctor's orders. We told six different people it was needed, including the doctor making rounds and her oncologist. There had to be doctor's orders. We were very clear. After the happenings the week prior, we knew the importance of keeping the incision free from infection. She had missed three doses of antibiotics due to our time in the ER/hospital. There was no way, we felt comfortable waiting until the next day. The risk seemed too great. We insisted the packing be changed. They refused again and again. I was told I could bring my own supplies and change it for her. Best they could do is change the gauze outside of the wound and physical therapy would change the packing the following day. It was unacceptable. I grabbed supplies and drove back to the hospital at 12:45 am.
I was disgusted. If they couldn't properly attend to packing a simple wound, what would happen with complications from Chemo? By the time, I arrived, my mom was so worked up she wanted to leave. She didn't feel she was receiving adquate medical care. I didn't blame her. The staff had also lost my trust. This was the first time, I left her side and this happens. From then on, I'd be frightened to leave just to pee. I tried speaking to the charge nurse, but that failed to help. Her story had changed, she said there were doctor's orders, but they were not specific. The nurses don't tend to wounds, only Physical Therapy during the day. By now, there was no changing my mom's mind, she was leaving. We left against medical advice. I took her home. I changed her packing.
These nurses might have only been doing their job, but it put my mom at risk. If procedures at the hospital are that strict; a doctor needs to be on the floor at all times. Two hours had passed and we were no closer to rectifying the situation when we decided to leave compared to when my mom first called. We called the oncologist answering service and that was no help either.
We waited for his office to open and called to find out what was next? We were told they would get a message to the doctor. We never cancelled the biopsy scheduled at Valley Hospital on Friday (thankfully) so we called them to find out what it would take to make that happen. We needed the lab work taken from the ER at Southern Hills to be sent to Desert Radiology. My mom called Southern Hills to have this done and they said the doctor had to initiate it. She called his office back and they said it takes 24-48 hours for the request. We knew it wouldn't allow enough time. The test was only 20 hours away. Meanwhile, the doctor had called while my mom was on hold. We took his call. He advised she do the biopsy and we'd follow up in his office next week. All was fine, until we explained that we were having difficulty getting the paperwork needed to make the biopsy happen. He grew aggravated and claimed he wasn't our secretary, nor an employee of Southern Hills. We never suggested either, we were simply explaining what we were told and working to find a way to expedite the lab work getting in the proper hands. It was the last thing we needed. Everything had taken it's toll; we were physically and mentally exhausted. All we want is the best care possible.
My mom began to second guess her choice of oncologist. Overall, we are just utterly disgusted with the state of medical care. The system is broken. I'm sure the nurse and doctors are spread too thin, but they are treating people, not sacks of flour. Compassion and care is needed. Especially when dealing with delicate diseases such as lung cancer. I do not believe my mom should compromise. She is literally putting her life in the hands of her oncologist and support team. When you have no control; at the very least you deserve to be confident in the care you receive.
We agonized over all options, we have considered going to Chicago for treatment. Ultimately, my mom decided to have the biopsy on Friday. That was a joke, too. They had her scheduled for a CT Guided Biopsy of the Right Lung. Um, no! Let this serve as a reminder to always read your admitting paperwork! The procedure was delayed a couple hours because they had to sort it out with the oncologist once his office opened. Once, they finally had record of the proper procedure it went pretty quick. The doctor said that he had four good samples to send to pathology. He says they looked good, but I refuse to have false hope. They need to zip their lips until there is confirmation.
We wait until Thursday when we meet with her oncologist to go over the test results. We'll hear about the latest treatment plan, he suggests, and we'll go from there. We have an appointment scheduled on 7/31 with another oncologist in case my mom would like to seek another opinion.
In the meantime, my mom is at home with her three dogs and horse. Home oxygen and home health nurses allow her to stay put, until her appointment or the next emergency. Certainly hoping for the former. I know how awful and stressful this month have been for me, I cannot imagine how she must feel. At the very least, she has earned a few days of peace.

July 21, 2014

El Dorado Cantina is a month shy of its grand opening, yet it's already a gem. I was eager to try it after such promising reviews. I had read it is next to Sapphire, but I didn't take it literally. I should have, because it is indeed in the same building but with its own entrance. The restaurant is upscale and our group of four were cozy in a booth.
We started with house margaritas and cold cervezas. We were quickly brought chips and three types of salsa: mild, tomatillo and habanero. All were fresh and delicious. We couldn't resist the tableside guacamole ($12). It did not disappoint!
Moving on to entrees, we tried the carne asada burrito ($12.50), carnitas tacos ($7.50, seafood enchilada ($13.50) and Milaneza ($17.50). Everything was fresh and tasty. We were all very pleased.
They are currently offering specials (ladies dine for free on Wednesday 9:30-10:30pm) and happy hour ($1 tacos 3-6pm); hopefully, they will continue. It's been a long time, since I've had an enjoyable sit down meal in a Mexican Restaurant. You wouldn't expect a restaurant of this caliber given the location, but it delivers. I'm already planning my next visit.
Next time, I won't be such a slacker, and I'll be sure to get some photos to share.

July 11, 2014

Can I get off the roller coaster now? It's been a crazy few days. We met with oncologist that believed that my mom was stage IV instead of stage III B, she was unsure of the type of cancer and planned to start chemo next week. There would be four rounds of treatments which would be 4x/week with three week breaks in between. Leaving that appointment left us confused and feeling defeated. We knew we had to looking into getting a PowerPort implanted. So, we stopped in Dr. Chung's office to see about that and to have her incision looked at, because it opened up that morning. Dr. Chung was in surgery, and advised us that it may be infected. He instructed us to go the ER and he would put her on the books for surgery the next morning to treat the infection. If infection was present then a port could not be put in nor could she start chemo until it was completely gone. This was devastating. I pleaded that it didn't look infected, but something was indeed wrong. He said, he'd come by the ER to examine it.
Thankfully, blood work revealed no sign of infection and he was able to determine that this was a false alarm. Such a relief. Surgery was cancelled and mom just has a wound that needs to be packed two times a day. Fortunately, I have experience. Unfortunately, it's another snag in a mountain of problem solving, schedule arranging, etc.
We met with a second oncologist yesterday, for another opinion. We much preferred his approach and appreciated that he does not put the cart in front of the horse so to speak. He wants conclusive results rather than making assumption. Her pathology report is not complete. Findings indicate she has lung cancer, however, the type is unclear. It's about 80% that it is NSCLC. This doctor has asked for it be reviewed again by colleagues to see if they can get 100% certainty. It's important because treatment varies between NSCLC and SCLC. He has also ordered a biopsy for lymph nodes in my mom's groin. This will help determine the stage, as well as the type. Activity showed up in this area on the PET scan, it is unusual to do so for lung cancer. It is possible that it is due to another type or it could be benign. Time is of the essence, but knowing exactly what she is up against will only improve the success of treatment. So, I don't mind slowing down a bit to let due diligence take place.
We should have answers and a treatment plan by this time next week, at the latest. We can also admit my mom into the hospital and fast track the whole thing if her breathing continues to be a problem. It's our call, and time will tell.
In the meantime, I'd like to get my mom home for a couple days. I hate that she feels like a prisoner, but it's been what's best. I know once chemo begins she'll be stuck for some time so it's very important that she can find a way to recharge before the next hurdle. Going home, might just allow that.

July 7, 2014

Last Monday, my mom had a mediastinoscopy to biopsy her lymph nodes. The procedure went well, the surgeon was able to get good samples. During surgery, a frozen section was tested for cancer and it was negative. When I met with the surgeon, afterwards, he seemed to think it was infection and not cancer. I knew we weren't out of the woods, but it felt so promising. I knew it would come as a great relief to my mom, I couldn't wait to tell her.
Recovery is typically an hour or two. Time passed, and I still could not see her. I was told she was too groggy. Another hour went by and I still could not see her. I was beginning to worry, she's a diabetic and hadn't eaten since 8 o'clock the night before and it was now after 2 o'clock. Finally, her nurse came to talk to me. I gave her history about difficulty coming out of anesthesia and asked her to check her blood sugar. A little while later, I was told by someone else her blood sugar was ok. A couple more hours went by before they finally let me see her. Her oxygen levels remained low and she was being admitted for observation overnight. After two more hours a room was ready, when they moved her for transport the shift put pressure on her lungs and it felt like an elephant was on her chest, that coupled with the chest and back pain was a red flag for a heart attack. They now had to rule out any cardiac issues. My mom and I knew it was her lungs and not her heart (she was just cleared by the cardiologist before the bronchoscopy), but they had to follow protocol.
She was moved, but couldn't eat until she was cleared for cardiac. Of course, the kitchen closed by the time she could eat. She drank apple juice to spike her blood sugar. Respiratory did breathing treatments every four hours and then every two. Every hour someone came to check vitals or request a blood draw. We were refusing blood draws. My mom's veins are shot (just to get the IVs in they had to gas her before the surgery). They refused to draw from the IVs so we weren't going to let them torture her without very good reason. After refusing three times, they finally took the hint. Whoever says one gets rest in a hospital is completely out of their mind. My mom might have gotten five hours max by ten the next day. I had no more than 3.5 if you strung every cat nap together.
By mid-morning her oxygen was stable. Her surgeon came to see her, the incision looked good. He said he'd call her pulmonologist and she may go home with oxygen, but she should go home. Once she finally ate, she perked up a lot. It was wonderful to see. As time passed, the rotation of different departments checking on her continued on the hour, until we asked to be discharged. Then, everyone disappeared. My patience grew thin, we called the nurse and he said she would be staying overnight per the doctor making rounds.
Umm, no. He never said any such thing to us and they were only treating her with breathing treatments. We could do those at home, where she could actually rest; so I saw no reason to stay. I wanted to talk to the doctor. I needed a good reason for her to stay.
We waited. And waited. I had enough. This time I was told we needed clearance from the Physical Therapist. It was the first step toward discharge. We met with him earlier in the morning, but we waited. And waited. Two hours later, my patience was gone. I called for the nurse. Turns out we weren't waiting for the PT, she was cleared this morning. I was furious. He called the doctor and came back to say we'd be discharged in 40 minutes, the doctor had to write his notes. An hour, 10 minutes later we were finally cleared to go. I was so annoyed, but happy to be free.
I thought a good night's rest would do my mom well. She didn't feel as good as we hoped. She was weak. Breathing was a chore. This continued. Then, her incision began to drain. We were never told this was a possibility so I called the surgeon's office. He called back and said to dress it, and come into the office on Thursday if it was still draining.
Thursday, we found ourselves at his office. The seeping had turned to gushes when she'd cough or blow her nose. He said it wasn't normal, but also nothing to be concerned by so long as it didn't show signs of infection. Thankfully, it has remained clean. Though, it's still currently draining. He said eventually it will stop. I never thought eventually wouldn't last this long, but it has. While there, my mom asked if the Valley Fever results had come back. They tested her blood at the preop appointment. They didn't, but surprisingly he had the pathology report from the biopsy. We went over it there and then, rather than waiting for our appointment on July 8.
Four lymph nodes were tested. The first three were negative for cancer. The fourth was positive. We received the news we feared the most, she was diagnosed with stage III B non-small cell lung cancer. Life as we know it changed in that very second. We were taken by surprise, we thought she had dodged the cancer bullet, but here it was square in her chest. He apologized for getting our hopes up, and later confirmed that it was inoperable and chemo and/or radiation would be the course of treatment. He suggested an oncologist that has an office upstairs, I jumped at the opportunity, when he offered to help get us an appointment. He physically walked us up to her office. He's been really great, if you need a Thoracic Surgeon in Las Vegas, I highly recommend Dr Arnold Chung (even if he is a Cubs Fan).
We meet with the oncologist on Wednesday. We will seek a second opinion. And we want to explore all options. My mom's health isn't great right now, so I fear it won't be a fair fight. I will support whatever she decides; she has no control over her cancer, at the very least she should be in control of her plan for treatment. Initial research indicates she is a candidate for clinicals so I'm hopeful, but also realistic. Her quality of life is most important. She is in shock, and every day is a battle to breath. However, she's finding strength in Addison's arrival. That baby is a blessing in more ways than one.
We've since been in the ER twice. Both times we've left the house since returning home from the hospital have led to time at the emergency room. It gets to the point that home breathing treatments aren't effective. The ones in the hospital seem to help, and the oxygen makes the lung pain ease up and allows her to catch her breath. The odd thing, though, is her oxygen levels never dip low enough to indicate she even needs the oxygen. The ER doctors are at a loss. They want to run tests to rule out various conditions. But she's had so many tests with contrast, etc. That have all come back fine; we refuse. Especially, since we know what's wrong, now, the lung cancer. But the diagnoses hasn't been helpful in getting her feeling any better. We've ok'd chest xrays to check for collapsed lung or pnemonia and both came back clear. So, the doctors discharge us and say to return to the ER, if needed.
We've been anxiously awaiting today, hopeful, that we could get in to see her pulmonologist. Her appt isn't until Wednesday, but we feel it's urgent that she receives specialized care. I don't feel her primary or ER doctors are equipped to help at this point. As of now, it looks like we're stuck til Wednesday. Her doctor is in ICU this week, no other doctors in that office can see her, I had my mom try another pulminologist in the hospital she had her surgery but no luck there either.
Meanwhile, I'm hoping my some miracle he'll squeeze her in today or at the very least, we can avoid any more trips to the ER.